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A Deep Breath for Kate

Kate Karlek Fischer is your friend. If you’ve met her—in person or online—you’ve been added to her circle, and I can promise you that your life is better for it. She’s also my daughter’s cherished Gramma Kate, my father’s life-long love, my brother’s guiding force, and my beloved mom.

Over the last eight years, Kate has gotten used to supplemental oxygen and regular pulmonary function tests. Gradually, her lung function has dropped from 100% down to 68%. But when it dropped even further to 40% within a short six-month window, well… that was significant. That’s when she got used to being tethered to extra oxygen around the clock. Happily, that number stayed at 40% for three good years, and after each visit to Duke Medical Center for testing, she was happy to report that she was still “too healthy for a transplant!” Sure, she’d had to exchange things like tennis and running for other things like knitting, reading, and writing, but life was still good and full of plenty of happy distractions. In November 2016, however, we learned that Kate is no longer “too healthy.”

Though a lung transplant is life-saving, it’s also most assuredly financially draining. Even with insurance, we’re facing very high expenses including relocation to be closer to Duke in the months following the transplant, post-transplant medications of up to $1,200 a month, co-pays, lab fees, and so much more. This presents a challenge that our family cannot meet alone.

To help with the financial burden of Kate’s uninsured expenses, a fundraising campaign in her honor has been established with Help Hope Live, a trusted nonprofit organization that has been providing community-based fundraising guidance to patients and their families for more than 30 years. All donations are tax deductible to the full extent of the law, are held by Help Hope Live in the South-Atlantic Lung Transplant Fund, and are administered by Help Hope Live for transplant-related expenses only. Please consider a contribution.

Thank you all so much for your prayers, support, words of kindness, and generosity. Please keep an eye on this campaign page where we’ll be posting updates regularly and maybe even planning a fundraising event or two. Your help means the world!

With love,
Meagan Kopp, Kate’s Daughter

Updates (8)

June 10, 2017

Seems like time for an update, right? Well, we’re still in a holding pattern, still waiting. There was a flurry of excitement over Memorial Day weekend. Earlier that week, while I was in rehab, I noticed that my oxygen was dropping down into the 70s (should be low 90s at least) while I was walking. It went back up where it should be when I switched to the “rebreather” mask, which has a small bag attached, and somehow recirculates the air, making it more accessible. But you have to use at least 10 liters of oxygen with it to be sure that you’re not re-breathing your own CO2. I assumed that the drop happened because my fibrosis was getting worse. I had known it would, but I still wasn’t prepared.

Sunday found me checking into Moses Cone Hospital in Greensboro via the Emergency Room, because the oxygen system we have at home wasn’t sufficient to meet my increased needs. One night, a couple tests, a new prescription and a duplicate concentrator set up at home, and I’m back in business.

Still waiting, still adapting. But I’m also complaining quite a bit. Wearing a plastic mask over your nose and mouth with a sandwich-sized plastic bag attached under your chin–and then all attached to the top of your head by a green elastic strap–is a hard look to pull off. I’m trying, but I need a little more work. I’m adding pictorial evidence to my gallery here strictly for your entertainment. Please laugh. It’s the only thing that makes me feel better.

And again, I thank you for prayers said, and ask for your continued prayers. I’ve no doubt we’ll get there. This is just a detour. Thank you for staying with me!

May 26, 2017

Waiting. It’s hard on your nerves. First we were waiting to hear if I was going to be a viable candidate for Duke’s Lung Transplant Program. A week of rigorous medical testing in January, and I received a letter telling me I had made the grade. Yay, Kate. It felt good to be accepted.

Next came the wait to actually be placed on UNOS’s list. That kept me busy for a while. I desperately wanted to be on that list, because until I was, my condition would worsen, but there could be no hope for relief. But first there were a lot of loose ends that we needed to tie together. More medical appointments to be made, caregiver classes to attend, fitness goals to be met and maintained and, perhaps most importantly, fundraising. We needed to raise at least $10,000 prior to listing. That goal was met fairly early in the process, thanks to you, my wonderful, generous friends. With your support and your prayers, I was finally listed. I felt like I had won the coveted Mirror Ball Trophy.

What next? More waiting. Now I am waiting for a phone call. There are still loose ends, but it has gotten to the point that if they called me now, this minute, and said “We think we have a lung for you,” I would drop everything and run, knowing the details would somehow work themselves out. I have a wonderful bag, but there’s nothing in it yet. I won’t need anything–just a ride to the hospital. And my caregivers. And prayers–lots of those!

Waiting is getting harder. Breathing is getting harder, and my oxygen needs are increasing. Doing everything is getting harder, including sleeping through the night. I constantly remind myself to trust God, to envision the positive outcome I desire, and to stay focused on that. I try, but sometimes I fail. That’s gotten harder, too.

I have no idea how long I will wait. I just know I have to do it. And I know that prayers are helping, so please continue to mention me in yours? Thank for you that, and for all that you have already done.

Love,

Kate

May 16, 2017

Happy Mother’s Day!

It’s been an eventful week and my emotions have been all over the board, but as I sit down to write this, I feel happy and full.

If you read my husband’s update, you know that I am now listed! That happened last Tuesday, and it feels like a huge hurdle has been crossed. I had just returned from my rehab session in Greensboro, and opened my e-mail to find a message from my coordinator telling me it was official. She was still in the conference, but she knew I’d want to know right away. She was right. If she’d told me in person, I would have hugged the oxygen out of her!

It seems like it’s been a long wait to get to this point, but it may very well be that we “ain’t seen nothin’ yet.”

How long will I have to wait until an organ match is found for me? No one can say. The average wait time at Duke is about a month after listing. About half of the people that started rehab with me already have new lungs. But I have a high number of antibodies. When I try to explain that, it becomes ridiculously complicated. What it means is that about 70 percent of the population would be unsuitable donors for me. So I can expect a longer wait than average. The good news is that, now that I’m listed, I am ready when the call comes.

As always, I end by saying thank you, and asking for your continued prayers. Your prayers have brought me this far, and your financial assistance and other support is something we could not do without. Please continue to pray for patience and peace as we wait, and maybe include some prayers for my donor family, whoever they may be. Thank you. I love you all.

May 10, 2017

Kate’s husband, Greg here this time. After seven + years knowing she was working faithfully towards today, in the 11a hour, May 9, 2017, Kate was “listed” for lung transplant at Duke University Hospital. Now the anxiousness begins in earnest. A bag with necessities will be prepped and ready to go with an hour or so notice to get to Duke when they call. It could be days, weeks or even a few months, but my Kate will stay ready to handle the surgical trauma and she’ll recover to an extended, more vibrant life without supplemental oxygen. We pray and thank you all for your continued support. Stay healthy family and friends.

May 8, 2017

I keep reminding myself that something could still come up–something they just haven’t thought of yet. I’m almost afraid to hope. Since January, when I made it through an entire week of evaluations at Duke in the hopes of being accepted into their lung transplant program, I have been waiting for the news that I have been officially placed on “The List.” Today will live in my memory as the day it started happening.

Of course I will continue having tests, right up to and beyond my transplant. But for now, the results are all in, my health insurance has given approval, and today I met with my coordinator and signed all the consent forms. I will be recommended at the team meeting next Tuesday, and could very well be listed that same day.

I am ready, yet I can’t quite imagine how it will actually feel to get the phone call confirming that it’s official. I get goosebumps thinking about it. Will it be a rehearsal for when I get the call telling me they’ve found a lung match for me? It seems like I’ve been waiting such a long time already. I hope it won’t be too much longer. But as I wait, I am going to continue to enjoy this life I have now, because I know it will be different afterwards. Still good. Just different.

I am so grateful for all of your prayers, for your love and support. They are the only explanation I can think of for the calm I feel. I hope I will never again be unconscious of the blessings that our friends have been in our lives. Thank you from my heart–our hearts–for everything.

May 6, 2017

This is not really the kind of update where I give you new information that you don’t already know. It’s just me sitting here with a grateful heart on a Friday afternoon, feeling like I want to share something with you. How about if I let you in on what we’re thinking is going to happen in the next week or so?

The collagen injection into my vocal cord last week appears to have been a success, at least as far as my voice is concerned. Everyone who knows me is thrilled, because the fact that I literally had no voice for about six months did not in anyway stop me from saying words. Now it’s just much easier to hear them, so yeah, success.

Next Tuesday will be the real test–my FEES test. I don’t know what the initials stand for, but the test involves a small camera inserted into my throat through my nose, which will then record what happens as I swallow various things dyed with green food coloring. If the injection did everything we hoped for, my newly plumped vocal cord will act like a GPS in my throat, making sure nothing makes a wrong turn and ends up in a windpipe or a lung.

I also have three other appointments on Thursday; there’s always something else that needs to be checked and cleared. Once those results are in, assuming all goes well, I will be recommended for listing the following week!

This is starting to feel like it’s really happening. I have already received so much from you, yet I ask you to continue to keep me in your prayers. Thank you with all of my heart.

April 25, 2017

Hi. Still some questions, but we’re moving in the right direction! Necessary appointments have been made, a plan for getting everyone to the appropriate classes is in the works and, thanks to your generous donations, we’re halfway to our fundraising goal! I can’t thank you enough!

Yesterday I had my paralyzed vocal cord injected with collagen. It was not exactly what I expected–to walk out of the clinic singing “Total Eclipse of the Heart” at the top of my lungs. It actually hurt a lot more than I thought it would, and my voice, while definitely stronger and louder, is…well, my daughter said I sounded like “an articulate frog.” I’m assured this is temporary.

Next week I will have another swallowing (FEES) test to see if the injection did all we hoped it would.

I need to get a tetanus booster and be cleared by Psyche–it could happen–and if all goes well, I’ll soon have a coveted place on that list!

Again, thank you all so much for all of your prayers and your kind words of love and offers of help. I definitely feel that I have lots of companionship on this journey. I pray for all of you in return!

April 19, 2017

Hi, it’s me, Kate. Wow. I am overwhelmed by the way this is going. So many people are helping us on this journey with prayers and positive thoughts, rides back and forth to Durham and, of course, generous donations. When we set this up, I felt like we had an unattainable goal, but here we are, almost at the $10,000 mark we need to reach before I can be listed.

I would love to be able to give you a definitive answer as to exactly when my name will officially be added to the UNOS list, but for now, there are still more questions than answers. What I can do is try to explain where we are now…

In addition to the financial goals, there are some other standards that need to be met. I began having trouble swallowing a couple of years ago. I attended speech therapy, where I learned exercises to strengthen those muscles. Recently, it was discovered that I have a paralyzed vocal cord. I had a CT scan last week, and am waiting to see what the next step will be. It’s likely that the scar tissue in my lungs has pressed into the cord, causing it to stretch. It can temporarily be fixed prior to transplant by injecting collagen into the vocal cord. It’s imperative that nothing be aspirated into new lungs, so if there is a way to make things work better before surgery, it will be done.

There are also several classes that my caregivers and I still need to attend. Those are a bit of a scheduling challenge, but we’re working it out. Knowing all the things that might happen can be overwhelming, but it’s better than being blindsided. The classes also make you realize that you’re not alone in your doubts and fears.

So those are a couple of the obstacles I’m immediately facing. I hope there won’t be many more. Every clinic appointment brings a little hope and a little more worry. It’s difficult to keep my balance sometimes, but having the support and love of so many wonderful friends helps tremendously. I thank you all for every thought, word and prayer, and of course for your generosity here, Helping Hope to Live. Thank you.

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Guestbook

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June 1, 2017

Kate, I wish you the best of luck and hope this all goes well for you. I'm a friend of a Deb and Lew's and they are here visiting us and Deb has explained to me what you are going through. You will be in our prayers and somehow you will get through this as you have such a positive attitude and that's what it takes!

Karen and Bob Sierks

May 26, 2017

Dearest Kate - our wonderful former neighbor & friend for 33+ years (I think that is about right-we have been in this house for 30 years). Words are incommensurate to describe you, your special soft way of caring and that loving heart complete with a sweet laugh. Watching your family grow has been a pleasure, I recall when Megan was 6 or 7 & when Dominick was born... what a history we have. Rich & Greg always have a great time when they reconnect as well. OK - enough of the serious stuff... here's the real deal. You are brilliant light, truly a beautiful soul. We are hopin' & a-prayin' that call WILL arrive SOON! Sending positive energy & trust in God that the gateway will open ASAP! We love you & will keep checking on your progress.... this drama will end & your dream will be realized! Keep the faith!! We LOVE you & the fam, Dawn & Rich

Dawn & Rich Humphrey

May 23, 2017

Met Greg today at Kelly and Brads wedding shower. He old us about your struggles and needing a lung transplant. I had a heart transplant 15 years ago at DUKE. You are in good hands there. I wish you well and hope the "call" comes soon.

Hugh Dickinson

May 17, 2017

Ya know, well because I love you and for wine and shit!

Sue

May 17, 2017

Keeping you in our prayers Kate. Hoping and praying that the wait for your new Lung is very short.

Jackie & Terry Custer

May 27, 2017

I think of you two more often than you know. I'm happy to know I can help some. Hang in there. Hope to see your kind smile at our next reunion. Love and prayers,

Don Dice

May 27, 2017

Kate, you are an inspiration to so many! Keep writing and sharing your journey. I hope you feel the love and support from your online friends.

Robin Hrdlicka

June 3, 2017

Hi Kate and Greg,
I just found out about Kate's challenges and I'm so sorry you are going through this. Please know you are in my thoughts and prayers. I'm rooting for you!

Monica Mancuso Murdock

June 3, 2017

Kate I think & pray for you often. Hugs to you and your family

Joan Snoddy

June 3, 2017

Kate and Greg, please know that you and Kate's medical team are in my daily prayers. It is an honor to make a donation on your behalf but of course, I wish we could do more. I love you. <3

Kate Lillie

June 3, 2017

My son, Grant, and your granddaughter are in class together. He told me that she mentions you often. I pray for you, your family, and the medical staff caring for you.

Melissa Juchatz

June 10, 2017

Looking forward to dancing with you soon!

Shelley Segal

June 10, 2017

We are keeping you in our thoughts and prayers and sending positive vibes.

Jackie & Terry Custer

June 10, 2017

Love you!

Linda

June 10, 2017

You are in my prayers.

Pat Kuhn

June 10, 2017

Love you and your family. Team Kate! Stay strong! Leslie & John

Leslie & John

June 10, 2017

Anything you need Kate, just call.

Cath Glasgow

June 10, 2017

You GOT This, Kate

Marilyn Knight

June 10, 2017

Dear Kate, wish we lived closer. But know that we are thinking of you often. Love to you and Greg.

Joe and Vickie

June 12, 2017

You are in my thoughts and prayers daily. Be strong as we all know you are.

Penny McCallum Coffey

June 12, 2017

Sending a check and prayers. Best wishes Kate. You are a strong and determined woman. You got this.

Bruce and Bonnie Byrnes

June 12, 2017

Kate we will be sending a check anything else i can do please let me know. Sending prayers hugs and lots of love .

Darlene Atwell

June 12, 2017

We are happy to be on "Team Kate" and are cheering you on 'til you are dancing once again!

Jackie and Bruce

June 12, 2017

To our wonderful friend Blockhead -we're with you every step of the way!

Susan (Pokey) and John

June 12, 2017

Kate, you are such a strong, wonderful, caring person. We lift you up in our prayers and know that you are facing this battle with massive strength & courage. Sending you our love.

Jan & Ray

June 12, 2017

You've got this because we are all backing you in many ways---sent with love....

Linda Schneider

June 12, 2017

Love you, thinking of you, and wishing you the easiest and best of times.

Ali St. James

June 12, 2017

Breathing - something most of us take for granted - I hope all your friends will join us in wrapping our arms around you and sending some $ support your way - The Handysides

The Handyside Family

June 12, 2017

Michael and I can't Thank you enough for being with Sue in her journey. You will always be in our prayers. Bless you and your loving heart.